About Us
Our Story
My name is Shai Bresee, i'm a 28-year-old mom on a mission fueled by love and inspired by my incredible son, Carter. Carter is my world, and his journey with lamellar ichthyosis has been both challenging and enlightening. Watching him navigate the ups and downs of living with this rare genetic skin disorder has been a profound experience that's shaped who I am and what I stand for.
When Carter was diagnosed, I felt a whirlwind of emotions – fear, uncertainty, and overwhelming love. But in that chaos, I found a fierce determination to make a difference, not just for my son, but for every family facing similar battles. That's when the idea for our non-profit organization took root.
Founded from the depths of my heart, our organization aims to be a beacon of support and solidarity for families like ours. We're on a mission to raise awareness, provide resources, and build a community where no one feels alone in their journey with ichthyosis.
Balancing the responsibilities of motherhood with running a non-profit isn't always easy, but every late night and early morning is worth it when I see the impact we're making. Carter's resilience and strength continue to inspire me every single day, and I'm grateful for the opportunity to be his mom and advocate.
In this journey of love, hope, and determination, I'm learning that even the smallest actions can create ripple effects of change. And I'm committed to doing everything in my power to create a brighter future for Carter and all those touched by ichthyosis even if that simply means being a voice.
So here's to love that knows no bounds and to the beautiful, messy, extraordinary journey of motherhood – it's a privilege to be living it alongside my sons, my greatest inspiration.
Thank you, with all our love
Ichthyosis Hope Haven
Meet Carter
Carter is a remarkable 7-year-old boy who has a passion for music, painting, and all things superhero-related. Despite being born with lamellar ichthyosis, Carter's determination and positive spirit shine through every day.
When he's not busy conquering the challenges that come with his condition, Carter loves immersing himself in the world of music. His favorite musicians, Jvke, Post Malone, and Noah Kahan, inspire him with their incredible talents and lyrics. From catchy beats to heartfelt melodies, Carter finds solace and joy in the power of music.
Carter's love for Marvel superheroes, Star Wars, and Transformers knows no bounds. Whether he's watching the heroic adventures on screen or playing with action figures, he immerses himself in the thrilling worlds of these iconic franchises. He dreams of joining forces with his favorite characters and saving the day.
In addition to his interests, Carter has an amazing blended family and is a loving big brother to his little brother and baby sister. He cherishes the special bond they share and enjoys spending time with them, whether it's playing games or just watching their favorite movies togehter.
Carter's resilience, creativity, and love for his family make him an extraordinary young boy. With his positive attitude and enthusiasm, he continues to inspire those around him and remind us all of the power of embracing our passions and cherishing the ones we love.